Eating

I would not describe eating as a big health problem as such, but it is still important to keep yourself at a healthy and manageable weight. Because of the muscle problems that come with Duchenne, ordinary day-to-day activities, such as breathing, require large amounts of effort and energy so maintaining a good calorie intake is essential. Eating can be a very tiring activity which is therefore a potential issue for your health once you reach about 17 or 18.

In comprehensive school I had very few if any problems with eating and drinking because I still had the ability to feed myself easily, being able to fully use my arms and hands and not tiring. Once I got to college however, I had less chance to eat and it became more energy sapping. I did not consider this to be a problem but slowly my weight was dropping off pretty much unnoticed.

At this point, I was still feeding myself and enjoying my food but in hindsight I was eating much less simply because of tiredness due to the effort of chewing. I would also say that I was quite stubborn so eating myself was a demonstration of my independence. This carried on until I went to one of my usual health check-ups aged about 19, and discovered to my complete shock and dismay that I was just under 6 stone. There was a period of about two years when I had to see dietitians and take high calorie drinks (Fortisip if you’re interested) to get my weight back up, which incidentally is now about 58kg at last count. In that period it was suggested I might even need a PEG feeding tube but this seriously motivated me to eat more. It wasn’t as if I didn’t want to eat as I love food but it was just more challenging.

For the last two or three years I now have most of my food blended in order to maximize the amount I can intake, and I don’t feed myself these days. Despite this, what I eat isn’t like baby food and I am able to have things I enjoy like steak, cauliflower cheese and roast dinner. If you are interested please check out @battle_the_bite on intagram which is run by my sister where she posts some of my meals.

The main things to take from this are to be aware of how much you are eating and don’t be embarrassed or feel down if you need help eating or have pureed food. Also, always eat what you want and as much of it as you like.